Supporting DH and 93 year old mom - Advice?

LindaLouise

I have a 68 year old DH with probably stage 5/6 ALZ - in MC for 5 months due to agitation, aggression, not sleeping and constant issues with trying to get out of the house. I'm going through that intense sadness of being without my partner of 46 years and so grateful to all of you who understand the emotions, loneliness and heartbreak of my situation - I spend time with my DH daily, and pick up grandkids after school - good for me and also helps their parents. The issue is my very demanding mom - she has caregivers in her home, as my brothers don't want her placed, mild dementia and needs a walker/wheelchair. She is very negative toward me, cries that my time can't be devoted to her due to DH, and always wants more visits, more everything. I manage all her food/supplies, and try to visit/call several times a week, but it seriously depletes my emotional reserve (granted its very low!). She is very sweet with my brothers and they think she is an angel! Anyone else have a similar situation? How do you manage the emotions? Seriously I sometimes can't make the call/answer the phone or visit because I know I don't have the reserve to do so, then I feel guilty. My brothers do help, but she has expectations of me, the daughter, that I just can't meet…

Quilting brings calm

I don’t know how you are managing what you are doing now. Visiting your spouse daily, visiting her multiple times a week, errands, seeing your grandchildren. You are actually doing a lot more than a lot of people who have what you have going on.

Here is what I suggest - visit your spouse 2-3 times a week. Visit or call or run errands for your mom twice a week. Take the other two days for yourself and for the grandkids. Build up those emotional reserves by starting to do something for yourself.

Your spouse will be fine. Your mom will be fine. She isn’t going to complain less if you visit more. It is what it is at this point. Your brothers need to take the point on her care since they don’t want to place her … and because you have a spouse , children and grandchildren to spend time with. Tell them this is all the help they get since they will not place her.

It is necessary to sometimes not visit and not answer the phone and not make the phone call. This disease takes the PWD, don’t let it take your health and then take you. You can’t take care of anyone if you don’t take care of yourself

SDianeL

ditto what Quilting Brings Calm said. Set boundaries. Nothing to feel guilty about. Tell your brothers what your plans are. Let the calls go to voice mail and don’t call her back. If she really needs you the caregiver can call you. Take care of yourself.

clarinetist

I was in a similar situation with my DH and my mom. My siblings didn’t want to place my mom, and we had caregivers in the home. Just before my mom was diagnosed, my stepdad with dementia died. I had been the point person for his care for several years. I told my siblings my priority was my husband, and they would need to handle my mom. My siblings stepped up and handled nearly all of her needs. I was able to visit and just be her daughter (albeit with my husband always with me) until she died this past summer. My DH is now in a nursing home and on hospice, and I visit daily. I take it easy when I’m not with him, and make sure to do things that I enjoy.

This is a painful adjustment for you, and your visits with your husband help ease that pain, I hope. Your time with your grandchildren is important for them and you. If your brothers can step up and take over your caregiving duties for your mom, your burden will be eased, which may be very important in the future, as things can definitely get more stressful with your husband (but I hope they don’t).

As Quilting so wisely said, your mom will complain no matter what you do. Sometimes in our culture parents have the unfair expectation that daughters should always be the caregivers. Your brothers can handle this, and if they can’t, they can place her. Set boundaries you can live with. My best wishes to you as you deal with this situation.

Carl46

You have to set boundaries, especially when you are caring for multiple people. My disabled son would have me visit and take him on outings every day if I would do it - he asked me to drive 50 miles to buy him a Coke the other day! DW lives with me and is a handful, and I am only one person. You, too, are only one person.

harshedbuzz

@LindaLouise

I am sorry you're in such a sandwich position. Are your brothers doing their fair share of the heavy lifting of visiting mom? Are they working and busy? Or is there an expectation that you're the girl and can just add it to your other responsibilities? Are they on your case about your level of participation or is that something you're doing to yourself?

The problem is dementia, as I'm sure you know, is that mom's orientation to time, empathy and memory of visits are not reliable making it impossible to defend yourself in this. That said, if she's really brutal and ranting at you, I would record her and share with the brothers. Not quite the same situation, but dad had a completely uninvolved brother who called me on occasion to judge the decisions mom and I were making for dad. He was two-faced in that he would tell mom how great a caregiver she was and thank her for care of his brother and then call me and play devil's advocate. DH and mom told me I was crazy and misreading his comments. Uncle had always been my bitch-eating-crackers. He called one evening when DH and mom were around. I put him on speaker and their eyes were opened.

You might even suggest that you are a trigger and need to absent yourself from visits as they only serve to upset her. I found dad held his tongue with an audience— perhaps a visit with the grands or a friend might make visits less stressful for you.

You have to do what suits you. You matter a lot. If a daily visit to your DH is good for your soul, continue that. If time with the grands is good for you, continue with that.

HB

JDancer

https://alzconnected.org/discussion/comment/230314#Comment_230314

Always such wise comments from QBC. "She isn't going to complain less if you visit more." So true! If fact, more frequent visits mean you have to listen to more complaints.

LindaLouise

Thank you all so much for your wisdom!! So much truth here - all of it helpful! I'm going to start with better boundaries today - my Mom does act very differently with me than with my brothers, and the more I visit the more she wants and demands and the louder her complaints. I already feel better reading and reflecting on all of your comments - somehow I just needed to hear that I can set aside the guilt about my mom and focus on my DH and grandkids! I love to see my DH daily ( I think it is good for both of us) but I also will work on taking an occasional day away to tend to house/yard issues so it doesn't build up to a stressful level. I knew you all would understand and offer the perspective I need! Can breathe again!

__Dolly__

https://alzconnected.org/discussion/71397/supporting-dh-and-93-year-old-mom-advice

I’m on the same boat: my DH with dementia doesn’t like to talk to his daughter (who is older than me and hates me for blocking her from having a relationship with his dad). My DH told her to leave us alone and to stop with the daily calls and wanting to see him everyday. In turn, she hates me because she thinks I’m manipulating him against her. I know that she triggers him to be mad so I unplugged our landline and he refuses to pick up calls in his cell phone.